Posts from November 2013

This is an even more thankful holiday for us than usual.  We’ve always been thankful for our good fortune, friends, and family, but it was two days ago that we got the strongest indication yet that our daughter Rebecca will live to see next Thanksgiving, and very possibly many more beyond that.

Tuesday morning we got up very early to deposit Carolyn and Joshua with friends, and then took Rebecca to Hillcrest Hospital for an MRI.  This was our first interaction with the radiology staff there, though by no means the last, and Rebecca as usual charmed the socks off of everyone there.  After she recovered from the anesthetic, we got lunch, picked up a few groceries, and then headed to the main campus of the Cleveland Clinic to get the results of the MRI.

To put it baldly, the results couldn’t have been any better.  The MRI showed no sign of renewed tumor growth, no regions that appear abnormal, not even signs of swelling secondary to cancerous activity.  This doesn’t mean that she’s cancer-free: nobody can say that with certainty.  As I wrote two weeks ago and XKCD beautifully illustrated a couple of years ago, there can be never really be certainty except of the terminal kind, but what we have now are strong signs that Rebecca’s cancer actually can be eradicated.  What that means is that instead of hospice, we can start a year of chemotherapy in an effort to make certain that the astrocytoma doesn’t return.  The normalness of the MRI, and the particular pattern of side effects she experienced from the first round of chemotherapy, mean it’s reasonable to feel hope.  As a friend put it, this isn’t the light at the end of the tunnel, but it means that there is a tunnel.  A long and difficult tunnel, perhaps, but nevertheless a tunnel that might one day yield to daylight and open skies.

And so we’re thankful for the nurses and doctors that have shepherded us through one of the most harrowing periods of our lives.  Without them, Rebecca would already be dead.  We’re thankful for the medical research and science that made it possible to remove so much of the tumor and target any remaining cancerous tissue.  Without them, Rebecca would be dying.  Instead, she is still as sparklingly alive as ever, and we have hope again.

We‘re thankful that we have the means and the opportunity to fight for our daughter’s life.  We’re thankful for family, who were there, and will always be there, when we need them.  We’re thankful for all the people who have supported us through the past several months, bringing meals to our house, ferrying our kids to school and activities, and doing the organization work to make sure it all happened.  We’re thankful for the Cleveland Animal Protective League, where we adopted a three-month-old shorthair tuxedo kitten yesterday.  We’re thankful to be together under one roof, and not under a cloud of grief.  We’re deeply, profoundly thankful.

A happy Thanksgiving to one and all, whether you celebrate a specific holiday today or not.  May every day be an occasion to be thankful.

• Thanksgiving was published on Thursday, November 28th, 2013.
• It was assigned to the Cancer, Personal, and Rebecca categories.
• There have been thirteen replies.

I’ve recently had the odd experience of seeing from the outside something that I usually get to see from the inside: the schedules and workshops for the first three An Event Aparts of 2014 have been announced.  Those shows are:

• An Event Apart Atlanta 2014 (17–19 February 2014)
• An Event Apart Seattle 2014 (30 March – 2 April 2014)
• An Event Apart Boston 2014 (28–30 April 2014)

All the shows feature a great mix of veterans and new faces, all coming together to bring our usual blend of looking to the future while staying firmly grounded in the details of the here-and-now.  The shows include workshops from Luke Wroblewski (in Atlanta or Boston) or Josh Clark (in Seattle) about mobile and touch design.

Ordinarily, at this point I’d say “hope to see you there!” but I can’t be sure that I’ll be able to hold up my side of that.  The same family crisis that forced me to withdraw from the last four AEAs of 2013 has also kept me off the roster for at least the first three shows of 2014, and I don’t know that I’ll be able to travel even to visit.  I’ll continue to be a part of the show, but behind the scenes, at least for now.

And that crisis is why I got to experience the announcements from the outside.  While I was in Philadelphia, I was basically on extended medical leave from AEA, with the team picking up every scrap of my duties they could.  They pretty much soaked up 99%+ of what I do daily, sparing me the worry of day-to-day operations and leaving me free to focus everything I could on my daughter and family during a very difficult period.  I am forever indebted.  I can’t ever thank them enough for what they did for me.  I am beyond fortunate to have had such a strong team of friends and colleagues at my back.

I will say that it was a good thing for me to experience the process from the audience, as it were, gaining a new perspective on what we do and how we do it.  I certainly don’t recommend a major crisis as the best way to gain that perspective, but I have a newfound appreciation for the value of stepping outside of the process as completely as possible.  You might be very surprised by how things look from out there.

But back to the point: the complete agendas are up for the first three AEAs of 2014, so go check them out!  And if you’re at all interested, I wouldn’t wait to register any longer than absolutely necessary.  Every show for the past two or three years has sold out weeks or months in advance, and cancellation rates are low enough that it’s pretty rare for people on the waiting list to get in.  I hope you’ll be there!

• An Event Apart 2014 Schedules, Round One was published on Monday, November 25th, 2013.
• It was assigned to the An Event Apart, Observations, and Work categories.
• There have been no replies.

With a lot of cancers, including the cancer that Rebecca has, the best you can hope for is an ongoing state of uncertainty.

At the moment, we’re in our month-long break.  The purpose behind this rest is to let her brain settle down from six and a half weeks of radiation treatments.  That’s enough time to let any swelling subside.  At the end of that break, just before Thanksgiving, she gets her first post-proton MRI, in order to establish a baseline.

The very best result we can hope for is to not know if there’s still cancer in there or not.  If her MRI looks clear, if all the structures look like they should and the brain tissue looks relatively undamaged and there’s nothing new and deadly, then all we know is that there is no evidence of cancerous growth — but absence of evidence is not evidence of absence.  Wondrous as it is, medical science has not yet developed imaging with enough detail and discrimination to pick out cancerous cells hiding among healthy cells.

The other result, the certain result, is that we find out, from seeing a tumor or other significantly abnormal result, that the cancer is still there and very aggressively attacking our daughter.  In that case, we’ll most likely be put in touch with hospice services.

Assuming that the baseline MRI and the ongoing blood tests show nothing obvious to worry about, we will proceed with an aggressive chemotherapy regimen.  As we do, every couple of months, a new MRI will be taken.  As with the baseline, the point of these MRIs is to make sure no tumors are growing in spite of the chemotherapy.  If not, we continue with the treatments, hoping to kill whatever microscopic bits of cancer might still be there, hidden between the neurons of her brain and the pixels of the images.

All the time wondering if all the cancer has already been killed, and we’re just pouring more chemotherapy agents into her to no purpose, like firing artillery barrages into a city long since abandoned by enemy forces.  All the time knowing that we can’t take the chance of stopping too soon, just in case there’s even a single cancerous cell left.

After a year of chemotherapy — assuming we make it that far — then we decide whether we should continue further, or call a halt.  I can’t imagine what we’ll be feeling by then, how we will bias ourselves.  Partly because I don’t know yet how the chemotherapy will affect Rebecca, so I don’t know what we’ll be feeling after a year of side effects.  Maybe we’ll be ready to take any chance to end the suffering of side effects.  Maybe we’ll be ready to take any chance to make sure all her suffering was not in vain.  Or maybe there won’t have been much suffering; everyone has a different reaction to the drugs, and some people have very few side effects.  I can’t know until then.  Assuming we make it that far.

After the chemotherapy is finally done, whenever that happens, then Rebecca will still get regular MRIs, all with the same purpose: to make sure nothing malignant is growing.  Every three months for the first couple of years, then maybe every six months for a few years, and then, with any luck at all, every year for the rest of her life.  And always, every time, the best possible result will be this: as of now, nothing has gone wrong.

I have lived with this exact uncertainty my whole remembered life, so this is not as difficult for me as it might have been, but I’ve noticed that this is the facet of our future that seems to horrify people the most.  I think most people have a vague sense that cancer is a disease that can be definitively cured — that it comes, it’s attacked with treatments that can be debilitating, and that eventually, if things go well, you can declare that the patient is cured.  That eventually, you can relax into the knowledge that the terror is over.

It’s never over.  You can never relax.  You can only get used to your new, heightened awareness of the horrible uncertainty, and to the probably new and unwelcome idea that uncertainty is and will remain the state in which you fervently hope to dwell, for however many days are left.

• Hoping for Uncertainty was published on Monday, November 11th, 2013.
• It was assigned to the Cancer, Parenting, and Rebecca categories.
• There have been ten replies.

In my last post, I mentioned the joy of being able to help people.  I’d like to ask you to help someone dear to me and important to everyone in the web community.

Molly Holzschlag, who has affected all of us in ways both incredible and subtle, a pioneer not just of the web but also of fighting to make it accessible and available to everyone, is facing a life-threatening medical condition, and along with that a solvency-threatening financial situation.  In addition to the high cost of her treatment, she is unable to work during the course of that treatment, which will be many months long.  So in addition to needing to cover the costs of her medical insurance and any uninsured medical care, she also needs to be able to pay for housing and food and all the stuff that goes along with living.

That’s where we, you and me, come into the picture.  You can read about the details on the GoFundMe page set up to assist her by Brian Keith Sullivan, but the upshot is this:  Molly needs the support and love of the community she has supported and loved for so many years.  Please do what you can to help her out.  Thank you.

• Help Us Help Molly was published on Friday, November 8th, 2013.
• It was assigned to the Personal and Tech categories.
• There has been one reply.

I want to talk about last Saturday night, and it has nothing to do with Daylight Saving Time.  Well, almost nothing, except very tangentially, right at the end.

First, a bit of back story: at the very first An Event Apart, way back at the end of 2005, one of the attendees introduced himself to me.  I didn’t recognize his name, Dean Sabatino, at first, but then he told me his stage name: Dean Clean.  As in, the drummer for The Dead Milkmen.

I may have squeeed a bit.

Later on, I was able to catch a show of theirs right before An Event Apart Chicago 2009 and meet the band.  My hair was even properly rock-n-roll for the occasion.  It was a great time.  And then, this summer, Dean came with Kimberly Blessing to visit us while we were still in-patient at CHOP with Rebecca.

So when I found out The Dead Milkmen were headlining WCSB’s fifth annual Masquerade Ball, I knew I had to be there.  I’ll admit that, on the actual day, I felt pretty tired and thought about staying home, but I sucked it up and pushed myself to the west side, because how often would I get a chance to see them in my hometown?  And, more to the point, be able to give each band member a signed copy of CSS: The Definitive Guide, 3rd Edition in exchange for having them sign my old Dead Milkmen CDs?  After all, three of the four of them are web designers and/or developers, and the fourth is getting back into the field.

I know, right?

So anyway, I went and got to hang out with the band backstage, in the small hallway endpoint that served as a dressing room.  And there, I found out that Howard Kramer, who is Curatorial Director at the Rock Hall, lives a block away from us, and is the father of one of my daughter’s good friends, used to work with the Dead Milkmen back in the day.  I found this out because he was there.  I also found out that when Howard moved to Cleveland in the mid-1990s, he used to call in requests to my Big Band radio show.  Howard in Cleveland Heights, who loved Louis Jordan.  I remember!

Okay, so yet again we discover that the world is not so large as it seems.  That by itself was enough to make the evening pretty memorable.

But then…

I helped the band get their gear to the stage (roadie time!) and watched them perform their final checks.  I was standing offstage with Dean, telling him I’d probably duck out partway through the set — it was midnight by then — when all the lights went out and the crowd roared.  Time for the big show!  Except, no, it wasn’t that at all: the power had gone out.

Eventually, it was determined that the power wouldn’t be coming back for a while.  So the Milkmen lined up at the front of the stage, Dean with just his snare and nobody with any amplification, and belted out five songs by cell phone and flashlight.  Guitar solos were sung and the vocals backed by a rowdy chorus of audience members.  After “Punk Rock Girl”, Rodney Anonymous jumped off the stage and walked through the audience to lead them onto the sidewalk, thus helping clear the still powerless hall.

I’ve never seen anything quite like it.  How many bands would have said that without power, there was no way they could play?  How many bands would have shrugged and said that the crowd situation wasn’t their problem?  Instead, they hit the stage and gave everything they could to give the fans a show, however abbreviated, and to help bring the evening to a close without incident.  Way beyond class, all the way.

With the hall mostly cleared, I shone my iPhone’s flash on Dean’s setup so he could pack up, and then helped the band load up their van.  That’s when I heard a guy in the rigging call out, “WE HAVE A PROBLEM!  That guy is having a seizure!”

That guy totally was having a seizure.  I was the closest to him, so I ran over and slipped a foot under his head to keep it from being bashed against the floor as he convulsed.  Someone else shouted they were calling 911.  The rigging guy got there half a minute after I did and told us that his friend was epileptic and sometimes just went into seizure.  I could tell he had done this before and knew how to guide his friend through the seizure, so I cleared the area to give them both space and went back to helping with the loadout, head spinning a little bit from the piled-up hyper-reality of it all.

With the van finally loaded up, I said good night to the band and headed home to get a few hours’ sleep.  They, on the other hand, drove down to the WCSB studio to play a live show on-air, encore and all.  That’s right, they played a full show anyway, in the wee hours of Sunday morning, time change and all.

The point of chronicling all of this is to serve up a reminder, both to me and to you, that it’s easy to decide you’re too tired or busy or whatever — we are geniuses at finding pretexts — and not get out there to experience life, in all its never-ending weirdness.  When you have an opportunity, take it.  You never know what might happen and who you might be able to help out.

• Dead Milkmen Power was published on Thursday, November 7th, 2013.
• It was assigned to the Cleveland and Personal categories.
• There have been five replies.